- -This is the first of three installments by guest blogger, Todd Bischoff
I've spent a large amount of my life working with children. I've taught literally thousands of children throughout North America how to play ice and roller hockey. A few years back, purely by chance, I was introduced to the world of children living with serious medical conditions. I was fascinated by how frankly these children would discuss their individual illness and the accompanying treatments. Cancer, chemotherapy, heart transplants. The kids would talk about their medical issues as easily as you and I would when discussing what to order from the menu in a restaurant. I was so inspired by these children that I dropped everything, went back to school, earned a degree in child development, and went to work as a Child Life Specialist.
Basically, a Child Life Specialist (CLS) works with children, usually in a hospital environment, and helps them psychosocially. This means helping children, in a developmentally appropriate manner, cope with their hospitalization, their individual illness, and whatever treatments they might have to endure. A CLS works closely with the child, siblings, and family members to ensure they fully understand what is happening, why it's happening, and how it's going to happen. Besides the educational component, there's a huge emotional connection that occurs between the CLS and the child.
So what does this have to do with Parkinson's Disease? Actually, quite a bit. Being a PD patient, as you well know, means finding inspiration to deal with your individual illness wherever you can. And I found it in my work with hospitalized children. One specific instance comes to mind.
I was working with a 12-year-old boy who was losing the battle to osteosarcoma, a deadly bone cancer. This child knew he was going to die, and was facing the trauma of a leg amputation in order to try and relieve his pain. He had a tumor on his knee that had grown to the size of a cantaloupe. Even the bed sheet lightly grazing his knee caused him immense pain. I asked him how he coped with the pain, his treatments, his loss of privacy (with doctors, nurses, and other medical personnel coming and going), and his life in general. What he told me will stay with me forever, especially as I battle my own PD demons.
He said he viewed his life as if he were in a boat on a river. Sometimes, the river is smooth as glass and you can row the boat wherever you wish. But sometimes the water gets a little rough, and you have to row hard to keep from smashing into the rocks or the shore. And then sometimes the water turns into intense rapids and no matter how hard you row, the current is going to take you wherever it wants to and you're left with two choices.
You can either keep frantically rowing, trying to control an uncontrollable situation, or you can let go of the oars, let the river take you where it will, and enjoy the ride. This child chose to enjoy the ride. I asked, 'How can you enjoy the ride when you know what the outcome will be?, which in his case was death. He said even though he had to let go of the oars and was scared, he knew eventually the water would be calm again and he'd find peace. And he told me he didn't want to spend the time he had left worrying about something completely out of his control.
Shortly before he died, as I was preparing to leave this particular hospital to move on in my career, he threw me a surprise going away party. At a time when (I believe) he had every right to be as self-centered as a person could be, he chose to focus his efforts on throwing me a party. He chose the unselfish act of doing something good for someone else, as opposed to feeling sorry for himself. I learned a great deal from him about being a good person.
In terms of my personal battle with PD, a 12-year-old child dying of cancer taught me that despite our circumstances, we can still choose how to deal with our situation. I choose to live my days as fully as I can. And I've come to learn that adversity doesn't 'build' character, it 'reveals' it, as this particular child taught me. It's a lesson I'll never forget.
- Todd Bischoff lives in Ontario, California, with his wife, Joyce, and their dog, Kaylee. Todd is an ex-athlete, actor, radio personality, voice-over artist, and Child Life Specialist who now is a public speaker on behalf of PD. He is filming a documentary on young-onset PD. He frequently contributes to the North Orange County chapter of the National Parkinson's Foundation Web site at www.npfocc.org.
